How long is too long to "wait and see"..

[becky1216]

Hi there..Just wondering how long you all would allow the neurologist to say "wait and see" when they
have performed pretty much every darned test they can think of to rule out other diseases??
I have been having symptoms (mainly fatigue, pins/needles, needle pricks, pains in my face, and now this
crazy muscle spasm/twitching in my legs, back, butt) for over a year. They come and go in different degrees..
I originally was treated (and still get monthly injections) for B12 deficiency..the neuro put me on Magnesium.. and now has started Gabapentin..theyve tested me for every disease imaginable and they keep saying negative..but what is it then??
I had a brain MRI which came back normal..had a lumbar spine MRI which showed a bit of degeneration but nothing to be concerned about ( although I did do PT and it helped some), I asked the neuro at one point if a full spinal MRI would be helpful..his answer?..."spine MRIs are like going on a fishing expedition..sometimes you get lucky and sometimes you don't"..
I keep track of my symptoms so that I know whats going on when and for how long..but when so I demand to get another answer other than the "wait and see" or the "it shouldnt be the effects of the B12 anymore"...

[sllowe]

Hi Becky,

It's my opinion that your current doctor is not doing you a disservice by waiting to see if anything changes on your MRIs. Afterall, MS is a disease of multiple scarring within the central nervous system. Normal imaging reveals that's no showing that at this time.

So, while something like MS may not be the cause of your troubles, you can ask the doctor where you should go from here since you are continuing to have problems.

Hope this helps,
-shell

[Sumanadevii]

I was foolish enough to wait and see for three and a half years under a neuro that dxed me with a pinched nerve in my neck.  How he convinced me and my husband that a pinched nerve could cause the damage it was doing to my body is......impossible to put into words.

I wouldn't wait and see another day, hour, minute or second.  Light a fire under your behind and get on to another opinion!

I wish I had.

Sumana

[becky1216]

thanks Julie..
I always feel like a hypochondriac when I tell them any new symptom..and Ive never really been a "sick" person so I feel so weird with it all..
Yes they originally about a year and a half ago said I had low b12..thats when I started the injections..but I can tell when I am in need of my shot..and those sx are COMPLETELY different than the sensations that I currently have ( note I wasnt yelling there just really stressing that I think the b12 excuse isnt really a good one anymore)..
I see the neuro for follow up in 3 months...I guess Ill just "wait and see" until then!!
thanks for letting me vent that frustration out!

[jujuminx]

Wow, Becky, sounds like you are just about at the end of your rope and I don't blame you.

So, you are on B12 suppliments does that mean the dr found you deficient?

They ran every test on me for close to 20 yrs but never did a spinal MRI, when they finally did that's when they found my lesions.  I am not sure what your neuro means by fishing expedition.

While it is more difficult to see lesions on a spinal MRI, it's not impossible and if you get get a higher strength one, the picture is even more accurate.

I am thinking at this point you have been patient enough, I would tell him, you want him to go fishing. Especially when your sx are mainly in the lower part of your body, a spinal MRI would seem very appropriate at this point.

Good luck to you and let us know your progress.

Julie